Shrinking the Silence

Sharing a voice on living with rare disease

Letter of appreciation — August 25, 2019

Letter of appreciation

I never would have anticipated having such grief and emotions over your departure from my treatment team. 

I’ve cried multiple times and then when I thought I had come to terms with the change, I felt all the emotions again when I had my first consult with my new oncologist. 

Funny that just like any relationship breakdown, there are triggers and reminders. The trigger for me the other day was being in the consultation room where so much has happened, with a new doctor – starting a new chapter in my desmoid tumour adventure. 

I realise that incredibly good and incredibly bad news was delivered there… and ultimately… trust, report and a caring doctor/patient relationship was formed in consult room 2. 

I’m not an easy person to win over. I like to challenge things and find ways to maintain that little bit of control in my life. You picked that up from the first few appointments and worked that into how you talked to me, and it didn’t go unnoticed. 

In the early days, every time i saw you I was incredibly nervous about what news would be shared, what my scan results would be. Every time, you delivered news to me in a calm way that made me feel I could keep going and have complete trust in the process.  Here I am, three years later and still showing up every 2-3 weeks for treatment.

Trust takes time to build, but with my rare and aggressive tumour…time wasn’t on our side, yet you managed to get me onboard with starting chemo. When chemo wasn’t slowing down the tumour at a satisfactory rate,  you took ownership of my care during a multidisciplinary team meeting where the general consensus was to operate. That was the moment I really knew you were on my side and were willing to go all out to find the best treatment for me – always with quality of life in mind. 

A rare disease and tumour like a desmoid isn’t easy to come up with a treatment plan for. It really touched me that you found opportunities whilst overseas for conferences to reach out to drug companies trialling treatments for desmoid tumours to find out more. 

You may no longer be my oncologist, but I will always remember everything you did for me through the hardest and scariest time in my life. 

Claiming back lost hope — August 5, 2019

Claiming back lost hope

Hope has been such a powerful and important word for me as I continue along the uncertain and rocky road that is life with a desmoid tumour and familial adenomatous polyposis. 

The many specialists and surgeons I see have always managed to give me advice that is future thinking – whilst being completely honest when things aren’t smooth sailing – and I’m so grateful for that as a young person. 

So you might be wondering why I’ve titled this blog claiming back lost hope. 

What I’ve come to realise upon reflection is the enormity of what chemo took from me. I went through 6 or so months of chemo when I was 27 and as it flushed through my body every week, it really showed my tumour who was boss and stopped it growing, and even started shrinking it. I credit the chemo for navigating me out of an extremely high risk situation…but like everything in life, it came at a cost. 

The visible cost was my hair. Nothing could have prepared me for the trauma and loss I felt. As I started reaching hair goals, I was elated but at the same time couldn’t imagine my hair getting back to it’s pre-chemo lushness and length. Here I am, two years on from my hair starting to grow again, and I still pinch myself when I look in the mirror and see a full head of hair that makes me feel like ME. 

Then there’s what was happening behind the scenes after chemo. It turns out, many body organs don’t respond well to the wrath of chemo – my ovaries in particular. A few months after transitioning from chemo to the treatment I’m on now, my periods stopped and were replaced with pre-menopausal symptoms. With these symptoms I lost hope in my future fertility and options for starting a family. It probably didn’t help that my long-term relationship had just ended as well – hope was not on my side and it felt like my body was failing me at a time in my life it was meant to be in its prime. 

It’s been a rollercoaster ride to say the least, but I feel that I am gradually coming out of the trauma and challenges of life after chemo and claiming back lost hope. 

I recently had blood tests that showed my hormones are back to normal and my ovaries are working again, after two or so years of essentially being in menopause. I picked up on my ovaries working before the blood tests as I have now had two periods. I don’t think I’ve ever been more delighted to have a period in my life! I am still very cautious and tentative on being too positive. As I have familial adenomatous polyposis – it will be a long process of genetically testing embryos because my personal choice is I don’t want to take the risk of passing this on. Then there’s the unknown about the full extent surgery and this desmoid tumour has had on my fertility… i won’t fully know until I try. 

What I am trying to do for now is live in the moment. I’ve gained back so much this year and on the ovary and fertility side, I’ve been handed a sliver of hope that I thought was well and truly lost. 

Most of all, I’ve once again been amazed at what my body can bounce back from.

I’m rare and these are my stripes — February 27, 2019

I’m rare and these are my stripes

Every year on the last day of February, rare diseases are recognised, as well as the challenges that come with the disease such as getting an initial diagnosis, being listened to by health professionals and finding treatment options.

There have now been five rare disease days since I received my diagnosis of Familial Adenomatous Polyposis (FAP) in October 2014. My initial diagnosis was then followed by another rare disease linked to FAP called a desmoid tumour.

The zebra often symbolises rare disease, because of the uniqueness of their stripes that all tell a different story – no zebra is the same, but there is common ground in that they all have black and white stripes.

It took me a few years to acknowledge the power of finding that common ground with others in the rare disease and chronic illness communities, but since I have it has made the burden of being different and going through struggles you wouldn’t even think of in your 20s that much easier. Knowing that I’m not the only one who has struggled with identity after chemo-induced hair loss, or that life and socialising takes it out of others as well and prioritising rest is a must from time to time – it’s things like this that I have found so helpful through connecting with people.

These days I also appreciate much more the opportunities that come up to raise awareness about rare diseases. A few months ago I felt really happy that during a hospital stay, for dehydration whilst overseas on holiday, I could raise awareness about one of my rare diseases, the desmoid tumour. I’m in such a routine of seeing doctors who have familiarised themselves with my condition that I forget that majority of medical professionals will never come across this type of tumour in their career. The doctor I saw during that stay was so surprised at how aggressively it grew in my abdomen, and genuinely was interested in how it was being treated.

There’s lots of hope and promise coming out of research into desmoid tumours, and smaller pharmaceutical companies (or subsidiaries of the larger ones) who are taking an interest in rare disease and rare cancer treatments. I’m also so grateful for organisations like the Desmoid Tumor Research Foundation in the US that keep fighting for answers for desmoid patients like me.

2019 is looking hopeful for me. My desmoid tumour is stable, and has been for close to three years. I find out in a few weeks whether I can look into doing my treatment less often and that to me is a HUGE milestone so I have all my fingers crossed.

So many things to be happy about — August 30, 2018

So many things to be happy about

After two years of active treatment for my aggressive desmoid tumour, I finally feel like things are back on track and that there’s more going for me than just hope, I have consistent scan results that show shrinkage each time.  The tumour hasn’t grown since the end of 2016 and things are looking promising that it will stay that way for the near future at least.

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Reflecting on my rare disease journey — July 4, 2018

Reflecting on my rare disease journey

I started my blog and sharing my story because of the isolation I felt, the intense silence I felt around rare disease in my daily life.

Hopefully I have helped a little and will continue to shrink the silence for those who read my story.

In my own experience, since sharing my story and joining the online social community, I feel like the silence has shrunk for me.

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Acknowledging my medical trauma, three years on — May 2, 2018

Acknowledging my medical trauma, three years on

In September this year it will have been three years since I lost my bowel, it’s taken me this long to fully appreciate how much this has affected me. The bowel is a funny organ to lose. You often hear of throwing parties before amputations or things like that. When it comes to your bowel, how do you send it off in style? It’s not exactly an organ we talk about openly.

My fight or flight response at the time definitely was to fight. I pushed through and didn’t let my emotions get in the way of moving past each hurdle and making a full recovery, although very importantly I did start seeing a psychologist because I did have a lot of fears and anxiety around the diagnosis. I had no idea how to process the news that I needed to have major surgery to remove my bowel. I barely knew the importance of my bowel (I definitely do now that I no longer have it!).
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When you’re invisible — April 21, 2018

When you’re invisible

I don’t look sick. This brings about lots of assumptions about me.

Without knowing me well and just by looking at me, you wouldn’t know that I have short hair because it fell out from chemo. And that because of that chemo and the ongoing treatment I have now I often feel tired and out of energy.

You wouldn’t know that I have a tumour the size of a large mango in my abdomen.

You wouldn’t know that I’m missing my large bowel that means I don’t absorb all the nutrients and fluid that would be useful to have.

You wouldn’t know that I really need that seat on the train, but I’ll make do with leaning on the stair walls.

You wouldn’t know all of this because in order to not be defined by my illness I try really hard to maintain normality and keep going and pushing myself.

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When your body starts catching up with you — April 11, 2018

When your body starts catching up with you

I’ve recently realised that I’m at a stage in my journey with rare disease that my body is catching up with me, and a lot of my problems are chronic and aftermaths of necessary surgeries and treatments to save my life. It’s taken me a few years of being ill to truly appreciate that a large part of my life is dealing with chronic illness, that will never go away, and will leave me with periods of feeling fatigued and dehydrated.

I have diseases that are very rare and that involve monitoring and removing cancer before it becomes a problem. This means that one of my hats is cancer. Yet I’ve never felt I am the true story and example of bowel cancer, because I was incredibly lucky to find out about my FAP just in time, when the polyps were starting to change to cancer, and I had my bowel removed. I am still at risk for cancer, with pre-cancerous polyps all over my duodenum, stomach and ampulla, but these are monitored regularly and removed when they start growing.

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Another year of being rare — February 28, 2018

Another year of being rare

Today is Rare Disease day. Last year on this same day was the first time I shared my story on social media and I can definitely say I’ve never put myself out there like that before, but I’m so glad I did because in the rare disease and chronic illness community, we need as many voices out there. I’ve also learnt more about myself than I could have ever imagined at the same time.

The hashtag for this year’s Rare Disease Day is #ShowYourRare.

Here’s what my rare looks like in a year:

  • Close to 50 regular blood tests, then add a few from hospital stays
  • My portacath accessed close to 50 times for IV treatment
  • Give or take 30 hot and humid summer days struggling to stay hydrated with no colon – the struggle is real
  • Unknown impact on my fertility
  • 6 day procedures
  • 2 new doctors making it a total of 6 specialists I regularly see
  • 1 amazing treatment with no name, keeping my desmoid tumour stable with next to no side effects, and all thanks to research.

Research also happens to be the theme of 2018 and is so important for rare diseases. Trial and experimental drugs, like what I’m on at the moment, offer so much hope for diseases like desmoid tumours where the treatment path isn’t as clear cut because there aren’t enough patients to base success rates off.

This year I will need to rely on research and other options once again because the stock of the drug I’m currently on expires this year.

I am also so lucky that my rare also looks like this:

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I have my challenges but my rare disease was caught in time to be treated effectively and not reactively, and I can continue to live a full life.

Cancer and me — January 18, 2018

Cancer and me

I have a funny relationship with cancer. It keeps wanting to crawl into my life. It has a few friends on the inside of my body who are getting the area ready for cancer to grow and be victorious. (as is the nature of FAP where pre cancerous polyps grow in my stomach, duodenum and ampulla). But I’m one step ahead and they’re out of my life before cancer can take over.

I do have a relationship with cancer’s close cousin, the desmoid tumour. Unlike your typical cancers he isn’t malignant and doesn’t spread. He’s benign, but don’t underestimate his power, he is on cancer’s side not mine. He wants to rule my whole abdomen and when left to his own means he will do exactly that and take down nearby places like my urethra in the process.

We’re getting along at the moment and I couldn’t be happier. My body has claimed back it’s own space for now.

Then there’s the people on my team, taking a stand against cancer with me. The nurses I see every fortnight for my treatment and my oncologist who makes himself available to answer any of my questions or concerns, and is finding me the best treatment. And my family and friends who are there for me all the time.

Keep trying, cancer!